Monday, November 28, 2011

Melissa is another guest I was blessed to spotlight during last year's Thanksgiving Project HERE and I am pleased as punch to have her on again this year! I so enjoy her blog, Garden of my Heart. Her blog is always honest, real, and beautifully written! I loved re-reading her spot from last year and hear how her heart is growing along with her beautiful Rowenna!

Recently, we attended a Football and Cheese Ball party at a
friend’s house. There were 5 kids there, all age 3 or younger. They tore the
place up – in a good way – with their unbridled enthusiasm. They laughed and
shouted and got into everything. The dads watched football, the moms talked.

It was a delightful fall afternoon and when we got home my
cheeks hurt from all the smiling. Hubby reported he had a great conversation
with the dads, and my daughter was sound asleep, exhausted from her play date.

Throughout it all, I couldn’t help but notice the ease among
the group. The conversation flowed and the laughter was easy. And Down syndrome
only came up briefly, despite the fact that all our kids sport that extra
chromosome.

I am thankful to have this beautiful group of women to count
as friends. I am thankful no one says anything about the milestones my daughter
hasn’t met. I am thankful that they recognize and praise the things in her that
I am so proud of – that she will eat anything, that she is curious, that she
gives kisses. They see Rowenna.

Now for the soul-baring part of all this. It took until I
sat down to write this entry to realize that - for the first time ever - I am thankful for Down syndrome.

I never would have met this group of women if my daughter
hadn’t come with an extra chromosome. I never would have taken the time to put
Rowenna in a playgroup, and I’m fairly certain I wouldn’t have had such an
intense need for the support of other moms. Certainly I would have made other
momma friends, but this is different than I expected.

These women have become sisters and I can no longer imagine
life without their kindness, laughter, and support. We rally around each other
when our littles need medical attention and we drag each other out for lunch or
dinner when someone is having a bad day.

But best of all - the thing for which I am most grateful –
there’s no explaining between us. When someone’s child needs a sensory break,
it just happens, no questions asked, no odd silences. When a mom breaks out the
thickener so her child can have something to drink, there’s no explanation.
When someone’s child signs something, we all know enough signs to be able to
respond.

We get it. We get what it means to live this life,
challenges and joys and all. We don’t explain, we don’t apologize, we don’t
worry.

So today I am so very thankful to be surrounded by these
beautiful mommas, and I am thankful for this lesson learned: to see that there
are things to be grateful for when it comes to Down syndrome.

Monday, November 21, 2011

I am thrilled to have yet another new guest! Shonda is another of my signpost friends. Her son is 2 years older than Elise. I appreciate her parenting advice and her special education experience. She is a special needs teacher...the expert from both sides... This is a sweet reflection on her son's birthday!

What to Expect When You're Expecting…a Child with Down Syndrome

11 years ago today, I was holding a newborn Jack in my arms. Trying to nurse his weak body that unknown to us had a gaping heart defect which would require a major cardiac repair in just a few short months. The neonatologist had already entered the room to inform my husband and me that she was 99% sure our son had Down syndrome. JR and I were shocked and in denial. All of the physical markers they pointed out to us could be explained away in our minds, and we did just that to make ourselves feel better. The labs would be delayed for 10 days because of it being the week of Thanksgiving. Slant to the eyes? Emma had that, too. Gaps between toes? You should see my toes! Low muscle tone? Didn't seem that bad to me. Single crease across the palm of his hand? JR and 4 of his siblings have the same thing! I went through a range of emotions from anger to denial to shame. The only shame I have now is that I had shame then.

When our 4 and 1/2 year old, Emma came to the hospital room to meet her baby brother for the first time she said, "Oh, Mommy! You had a Chinese baby!" I began to fear the doctors were right. One of my first thoughts was how having a child with Down syndrome would impact Emma for the rest of her life. I grieved the thought of her having to take care of a sibling after her parents had passed. Wow, when I see them today, I realize what an unfounded fear and grief this was. Emma is a better and more grounded young lady because Jack is her brother. We went on to have another child, Lou, who is 19 months younger than Jack. Emma and Lou argue about who will "get to" live with Jack someday if he requires that level of support. Dumb me.

When Jack went to Vanderbilt at four months of age for his cardiac repair, I prayed like I'd never prayed before. Part of me felt like I was saying goodbye to my little fella whom I now loved despite whatever might be wrong with him. I prayed this prayer repeatedly: "God, I don't care what he grows up to do or be. I don't care if he ever walks or talks. Just please let him live!" Jack lived. His heart is repaired and there are no other plans for future surgeries; he takes no heart related medicines, which is miraculous.

I delved so deeply into the study of how to help Jack, how to improve his quality of life. Within a few months I knew everything a person could know about Down syndrome, but the road changed beneath our feet, again. At age 2 Jack began to show signs of Autism. By age 3 Jack was diagnosed with Autism. We jumped onto this new road and learned everything we could learn about Autism.As I reflect back on the last 11 years, I think of the many challenges we have faced with Jack, sure. But the joy of being his mommy far surpasses any of the times of trial. If anyone thinks I'm a Sally Sunshine, think again. I get it, I know Jack has challenges. I am not in denial about what those challenges might bring to his future, but every kid has challenges; Jack has different ones.

I am often asked to call or stop by and talk with parents who have a prenatal and/or postnatal diagnosis of Down syndrome for their baby. I am often uncomfortable doing so. There are many reasons why, but I would sum up my discomfort with these words, 'I don't have the answers'. I don't know how a certain and particular child with Down syndrome will turn out any more than I know how a child without a chromosome anomaly will turn out. I can't predict the future! As I have known many baby boys, born perfectly, later to be diagnosed with autism, when I would have guessed, "hey, baby boy, looks great, perfect karyotype, all looks great," and I would have been wrong. The karyotype of chromosomes makes us think we can "box in" a child's future somehow, and nothing could be further from the truth.

To new parents of a child with Down syndrome I would say, you call me, I won't call you. If many folks try to call you predicting the future, beware. I am no soothsayer and I know that the range of abilities for a child with Down syndrome is as varied as that of a child without. I can tell you a few things of which I am sure: There will be a slight slant to the eyes; there will be a smaller nose (not a bad thing right?), there will be some speech issues. Those are the three things I have seen and observed in all children with Down syndrome. That's it. How can we guess what/how any of our children will turn out to be? What would one say about all boys? All girls? All blondes, all brunettes, all Caucasians or African Americans. It's no good to box in groups of folks, any folks. I have known folks with Down syndrome who are musicians, folks who drive, folks who live independently, folks who marry! On the flip side, I have known folks with Down syndrome (including my own son, Jack) with a dual diagnosis of autism; no expressive language, limited adaptive skills, etc. The thing is, I can say the exact same things about kids I know born without Down syndrome. Why do we do it?

Friday, November 18, 2011

I was proud to have Tara on as a guest before, HERE and HERE. She is MY signpost. And I could never begin to thank her enough for sharing her thoughts and her Boy with me! I thoroughly enjoy her blog Madness Ensues.

She decided to share her heart in a reminder that I think we all need to hear. Often.

Life is not perfect. I
have a job that doesn’t feel very secure at the moment. I have a chronic autoimmune disease. I need to lose weight. I never seem to have enough money. I want an extra 2-3 hours each day. I need a new car. I don’t get enough sleep. I’m
the single parent of a special needs child - - life is a tad stressful.

In the past year, there were moments when I have wanted
to kill The Boy. There were times when
I was so frustrated
I could barely contain it. There were instances
when I was afraid
and felt desperate. There were
times when I felt defeated
and times I felt at the
mercy of ‘the system’. And there
were days that exhausted
me mentally, physically and emotionally.
These are the things for which I am the most grateful - - perhaps not individually,
but in totality.

Those of us with children with special needs tend to live in
the extreme- at the edges of the norm.
The frustration, anger, desperation, exhaustion and fear make the accomplishments
that much sweeter. The extreme brings me
understanding. It allows me to find laughter
in the ridiculous, joy
in the mundane and peace in the
typical.

I’m thankful for all
those in the special needs community who have come before me and lighted the
way and to those who are coming up behind me and help me remember where we’ve
been and how far we’ve come by telling their stories. I’m thankful to Tiffany
for (once again) giving me the opportunity to tell our story and say what I
think in a way I may not have thought about without her.

Monday, November 14, 2011

I met Annie through my blog last year. I started writing her on email, followed her blog (The House That Jade Built), and then probably stalked her on Facebook...That sounds about right. :) I wanted to make sure that she didn't get bogged down with the fear that came from the diagnosis....I was blessedly pleased to watch her face down the looming new life with prayer, joy, and hope.

When I asked her to write a guest post for this month, I was thrilled when she said yes! And it was beautiful to read her heart, offered to a new parent.

I am writing you this letter today to give you hope.

First a little of my background, on October 4th, 2010 I was pregnant with our third child. A child that we were so excited about & decided not to discover the sex so we could be surprised at birth. And surprised we were. On that day we had a level II ultrasound and a somber doctor looked us in the eyes and told us our baby had several soft markers for Down Syndrome, and a birth defect that would most likely require open heart surgery. We later found out that yes our baby girl would absolutely need open heart surgery.

It's normal to walk out of those appointments shattered. We were exactly that. I grieved a child I thought I had lost. My dreams of her future were gone. They popped all around me, bubbles bursting, plans unfolding. From that point forward I walked by faith. I researched & made friends in the DS community. I prayed constantly. I tried to pray away Down Syndrome, but more frightening her AV Canal. For the most part I was strong, but I had nights where I would break down. It was hard. Very hard.

On February 10th, I was finally induced at a major hospital to meet my daughter. I was so excited and scared to death that her heart would be worse than they expected at birth.

She finally arrived a much chubbier girl than they had anticipated. Her heart was stable, she nursed like a pro, and she was stunningly beautiful. We left that hospital 4 days later taking home our sweet daughter and expecting heart failure within weeks.

The doctors were right. She faced heart failure, slow weight gain, countless doctor visits, and medication that I charted to keep track of. At a day shy of 4 months of age, Ollie Faith was handed off for open heart surgery. I kissed her cheeks and told her to be brave and that Jesus would be holding her hand. It was the hardest day my husband & I have ever faced, but we did it because she needed it.

She was a champ. Five days post open heart surgery she came home on merely Tylenol sporting a brand new badge of courage.

It's been another 4 months and she is finally gaining weight. We have less and less doctor appointments to attend, and more and more in home therapy appointments to get her gross and fine motor skills going. Ollie Faith is the essence of the word amazing.

Last October Ollie's diagnosis broke us. We thought it was the worst news we had ever received. This October she is in our arms and quite clearly one of the most beautiful gifts we have ever experienced. She is what society views as imperfect, but in our eyes she is perfectly perfect!

I never imagined that I would become a mother to a child with special needs or that I would face a major surgery one of my children, but I am just that now. I honestly wouldn't have it any other way. Ollie Faith has rebuilt my broken heart into this beautiful masterpiece. She has filled it with faith, patience, strength, determination, and love. She has blessed her older siblings & her aunts, uncles, cousins, and grandparents beyond measure. Our community has prayed constantly for her and in turn she has educated a small town of 5,000 on the beauty of that one extra chromosome.

I look her in the eyes every day and she knows I am her Mom. I can see the love in her eyes. She holds so much joy in her smile, and I know she is happy and I know she feels loved.

So if you are a new parent and just received this diagnosis. I know it feels like the end of the world to you, but I promise this bundle of joy will be an amazing gift! This journey doesn't go without bumps in the road, but parenting typical children doesn't promise a smooth and straight course as well! I promise you that once the grief is gone and you have patched up your heart you will realize that this child is exactly what you needed in your life, and you will be blessed time and time again with the surprise of an "imperfectly" perfect child.

Monday, November 7, 2011

My girlfriend posted a challenge last year and renewed it this year. (Read it HERE) In the short, short version, she challenged us to find the random, small things that are sprinkled about in life...not the big stuff, we all say we are thankful for every year...which I am not disregarding, just that there are other things that we should be thankful for...

Yesterday, Elise fell asleep before I had to pick up Gabriel from Lacrosse practice. When it came time to leave, I could not wake her up. At all. As she is not at a developmental level to be left alone, irrespective of her age, I could not just leave her home to sleep.

So I had to wrestle her 70 lbs out to the car. Which is difficult enough under awake circumstances...but when she is asleep I am pretty sure she gains another 30-50 lbs. When she sleeps all her joints turn into jello and she is almost impossible to carry. Like a sleeping cat. I thought this back when she was a mere 40lbs...now I am turning into Inigo Montoya (in the Princess Bride) when he is dragging Wesley and keeps getting lower as he goes on.

Anyway, my Randomly Thankful thought yesterday was, "Wow. I am glad I am not the petite little thing I always wished I could be." If God had seen fit to give me the 5'0", fine-framed figure I had craved all throughout my life until adulthood, I would never been able to carry Elise up and down stairs at our old house while I was pregnant. I couldn't piggy back her until she was 6 in a carrier. I would never be able to strong arm her during tantrums at the grocery. I certainly could not get her to and from the car while sleeping. And the list pretty much goes on from there.

I am a sturdy 5'8". And I am thankful for every inch and every muscle nowadays. I sometimes find myself wishing for more... :)

On the flip side, as a friend observed, I would not give up my Elise to become a petite little thing, though either. It's worth it, from both perspectives...

Penny is a new friend as well. A treasure discovered in the wide, wide world of Facebook. She has an adorable munchkin, Wyatt, with Downs and some sensory stuff, who stars alongside his brothers in her blog, Penny's Peeps.

She offered this spectacular follow up about Therapeutic Listening. I have not ever heard of this before, but let me tell you, after this post I will be looking into it for Elise!!
Can I get a HOORAH for new weapons in the sensory arsenal??? :)

a major component of wyatt's sensory therapy has been "THERAPEUTIC LISTENING." "Therapeutic Listening" is defined as "an auditory intervention that uses the organized sound patterns inherent in music to impact all levels of the nervous system. Trained therapists learn to use modulated CDs to set up programs for clients in homes, schools and clinics." (Vital Links)

many experts believe that the auditory system is a critical link in sensory integration (which is the ability to organize sensory input from the body and the envirnment and to incorporate it adaptively in meaningful occupations). the vestibular and cochlear systems function similarly with "hair-like receptors moving in a fluid filled canal" as one system. "therapeutic listening" provides direct input to this system through various musical styles, types of filtering, and level of complexity! the music is actually "electronically altered to elicit the orienting response which sets up the body for sustained attention and active listening." (Vital Links)
so how does this all work? wyatt wears specially designed and "weighted" headphones to listen to cd's for varying lengths of time. the process involves building up the time spent listening. he had worked up to 30 minutes on the first cd before switching to the second cd in the series this week. his therapist sits with him, usually on one of their therapeutic swings, gently swinging back and forth. this gives additional vestibular input as he listens. this week he also crawled around and played while listening.

and what outcomes might be anticipated from this therapy? "Therapeutic Listening coupled with SI (sensory integration) tends to speed the emergence of:

what have we seen with wyatt? we have seen a HUGE improvement in his ability to focus on tasks in therapy! we have also seen improvement in his social skills (not hitting his friends as much). his postural control is better, he is showing improvement in both gross motor and fine motor skills, and he is jabbering away with varying inflections ALL.THE.TIME now! these are just a few of the changes we have seen!

"Therapeutic Listening" was created and developed by occupational therapist sheila m. frick, who also founded vitals links. her organization provides the materials used as well as training in the system to clinicians. another component of therapeutic listening is the "astronaut training program: a sound activated vestibular-visual protocol." although wyatt's therapists have invested in this program, they decided that he is too young for the movements that the program involves. but if you have an older child, you might look into this program as well!

Thursday, November 3, 2011

I believe Anna found me on Facebook...and I have never been so pleasantly surprised to be friended by a stranger. She isn't really a stranger...on quite a few levels, I am pretty sure she is just me, 7 years ago...seriously...so very many times, I have read one of her blog posts, on The Chronicles of Ellie Bellie Bear that makes me shake my head, and go..."Yep, Elise."

That said, when she asked if she could put in a post on Sensory Processing Disorder, I couldn't say "yes" fast enough...because it will make sense of a lot of things that Miss Elise does...and it saves me the trouble of reinventing the wheel! Because Anna says it beautifully!

On September 16, 2009, my husband and I received the surprise diagnosis that our newborn daughter, Ellie, most likely had Down syndrome. I had just turned 29 years-old, which was the same age as my grandmother when she gave birth my aunt Peggy. Aunt Peg also has trisomy 21. Like most parents, we went through the grieving process because we knew our Ellie would have to face so many challenges in her life. Because of Aunt Peggy and my experiences as a health care provider, I knew that my daughter would walk, talk, and be a contributing member to society, but that these milestones would come later and with the assistance of various therapies.

Fast forward to a few months ago. To the day that I got sucker punched in the gut . To the day when at a routine developmental pediatric appointment I heard the words “your daughter has Sensory Processing Disorder” [SPD]. The doctor continued to list a litany of therapies that my daughter would need. I just corralled my hyper/climbing/furniture-moving toddler, nodded, and took the paperwork with me. Once in the car, I sobbed and sobbed and sobbed. You see, unlike the Ds diagnosis, I knew absolutely NOTHING about SPD. Didn’t my little Bear have enough on her plate? Why must life become even more difficult for her? I took a deep breath and realized that Ellie is still the same Ellie. Nothing was different. A label was applied to her and that was it. A label. She is the same spirited girl.

A Sassy Pants Then.

A Miss Sassy Pants Now.

So what exactly is SPD? This is where I will sound a bit more clinical so bear with me as I attempt to throw in a bit of my dazzling wit.

See? She thinks I am funny :)

I went home and did what any mother would, but shouldn't do. . . I Googled. I read checklist upon checklist and discovered that potentially every single human behavior can be found on this list. Great, so we all have SPD? I am sitting here jiggling my legs and chewing my nails (yes, a nasty habit). Ack! I must have SPD! Quick, let’s slap the label on! The truth is that these behaviors are very typical, but it becomes a disorder when is affects one’s ability to complete tasks, learn, play, and/or communicate. In other words, the sensory issues (cravings vs. avoidance) are so severe that they impact activities of daily living.

The senses in a nutshell:

Our body has many senses such as taste, smell, touch (tactile), auditory, and visual but there are also body position in space and movement/vestibular. All of these senses are translated by receptors in the body such skin, muscles, the tongue, etc., that in turn send signals to the brain. With SPD, these sensory pathways are not functioning properly.

I am going to focus on hypo-sensitivity because that is what my daughter mostly has. She is in a sensory craving state. Except with baths--that is a whole other blog post that beautifully illustrates water hypersensitivity.

She knows I am talking about her.

One of the biggest issues holding Ellie back from communication and learning is oral sensory integration. These oral cravings are so intense that she seeks input from just about anything. It maybe is a toy, clothing, a lovie, teethers, paper or a board book (she needs the fiber), a toothbrush (super clean teeth!), crayons, you-name-it and it is in her mouth. At home, where Ellie is familiar with her toys, she is not nearly as bad with the mouthing unless she is tired or teething. My sensory-driven little Bear-Bear is a full blown mouther to the extent that speech therapy has become rather interesting. It also makes playdates rather entertaining. Those rocks on the playground must be really good. Salty. Indigestible however.

"You mean I am not supposed to chew on this?"

My little Chunky Chicken also craves motion. She is a mover, literally, and a shaker, literally. I had a hard time with this diagnosis for most of these behaviors seem toddler-like. She loves bouncing and being thrown high in the air. Most kids love that, but the difference is Ellie could do it all day and never be bored. She is also very clumsy with walking and not because she is a new walker. This is more of a vestibular issue where her muscles, joints, tendons, and ligaments are not working in sink with her brain. Again, these motor cravings impact her ability to play as she flits from one toy to another and crashes objects into walls. We have to strap the Bear down into a high chair during speech therapy.

What are we doing with Ellie right now to help her function in day-to-day life and improve learning?

It is so important to understand that these cravings will always be present. Ellie will most likely be the kid who chews on the caps of her ballpoint pens at school or the girl chewing gum. She will probably be the little girl who must swing the highest on the swingset and spin the fastest on a merry-go-round. That is okay. Our therapy goals are to help Ellie satisfy these cravings in such a way that she can form meaningful relationships, communicate effectively, play/work, and basically function in day-to-day life.

There is a lot of trial and error involved in finding things that will help Ellie. I will briefly touch on a couple that have worked so far and you kind find more in-depth information on my blog.

Ellie has “approved” objects for mouthing. One is her blanket and the other involves various types of chewelry which is essentially food-grade tubing. Now, for a whopping, wallet-emptying $0.26, you can purchase 1 foot of food-grade tubing at Lowes or Home Depot. I carry ~4inch tube pieces with me every where for emergencies. It works. Its cheap. It is easy to find. It is dishwasher safe. To implement the chews into your child's daily life (yes, there is a method to this), click on the link above or here.

Left: Book in mouth = not good
Right: book replaced with chew = appropriate

1. Heavy Work: essentially, I am making Ellie push heavy objects aka baby bootcamp. She LOVES it. For instance, we use one of those Little Tikes Shopping Carts. My sand-filled hand weighted hand balls (you can use canned goods or water bottles) go into the cart. Bear is then encouraged to push this cart around the house (or in the speech therapy hallways) prior to sitting down for functional play or speech therapy.

That blue round thing is a weight. The rest of the stuff Ellie added.

The long pink sock is weighted with rice. It is supposed to give good sensory input when laid across her lap. It is also good for heavy work as well.

2. The weighted backpack (Tutorial): This is along the lines of a weighted blanket. You can use rice or beans to fill the backpack SLOWLY building up 10% of the child's weight. Ellie wears her backpack walking from the car to speech therapy or to a doctor's office. Anywhere where she cannot just run to and fro destroying things in the process.

3. Joint compressions: this is hard to explain and there are no pictures. At times when Ellie needs high tactile input, she requests "squeezes". Basically, I grab her hands and squeeze them very hard, repeatedly. You can also do a very tight hug. We have a "row-row-row-your boat" compression where Ellie has to pull against her own body weight.

4. The swing: It is impractical to expect a toddler, with or without SPD, to sit for 45 minute speech sessions. Yes, she does get a break to push her weighted cart, but that doesn't work all the time. Also, it is rather difficult to imitate sounds if there is a chew in her mouth. Our therapy clinic also offers OT and PT, which means we crash in on the PT gym and borrow their swing. While Ellie is swinging, we have her imitate sounds.

This is just the tip of the iceberg. May more therapy sessions were recommended by Ellie's doctor, but the fact of the matter is this: there is only so much therapy one can handle. By "one", I mean me and Ellie and our credit cards.

Thank you Tiffany for allowing me this wonderful opportunity to blog about Sensory Processing Disorder. It is very much appreciated!

Wednesday, November 2, 2011

Last year I sweet talked a bunch of fabulous writers to guest post here for November!! I still consider it one of my triumphs!! I LOVED having so much wisdom in one place!!!

I love to have "proof" of our commonality. I love to have a place to send my new parent friends to say, "Hey, what you're feeling? EVERYBODY feels it!!!"

My mother reminded me yesterday of one of my all time favorite verses...she said that it was pretty indicative of what my blog's purpose is...and what the November bang is all about, too...

Jeremiah 31:21
"Set up road markers for yourself; make yourself guideposts; consider well the
highway, the road by which you went. Return, O virgin Israel, return to these
your cities."

God doesn't want us to gallop through our lives blindly. He wants us to remember how we got through our struggles. He wants us to hold close past joys. He wants us to reflect and help to guide others through their moments of floundering. He wants us to learn from our mistakes and warn others of our pitfalls. He wants us to celebrate the successes and share the secrets! He wants us to meditate on His Wisdom through it all!

I hope that you will consider sharing your triumphs, your struggles, your rants, your flashes of brilliance with all of us this month!!! I would consider it a high honor!!!

In A Nutshell

"Two are better than one, because they have a good return for their work: If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up! Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." Ecclesiastes 4:9-12

"Neither this man nor his parents sinned,"said Jesus,"but this happend so that the work of God might be displayed in his life." John 9:3

"Set up road markers for yourself; make yourself guideposts; consider well the highway, the road by which you went. Return, O virgin Israel, return to these your cities." Jeremiah 31:21

Tools of the Trade

Just a friendly service announcement to those who read this blog that aren't super computer savvy, all the writing in blue are hyper links. Hyper links will jump you to other blog entries, outside web pages, and news articles. Just thought some of you needed to know... :)

Be Respectful

All content including pictures in this blog are copyrighted under Copyright and intellectual property laws. In regular English: You may not copy or distribute or use my personal pictures or posts in any way without my permission, and that, folks, is the law.